Posts: 1 to 25 of 33

Topic: good and bad (mostly good)

What's up everyone! Long time no post... ok, bad news, last Monday urine started to get darker, itching started up again. Legit cause to freak out... bloodwork had elevated liver functions and biliruben 1.8 (i know, I'm a whiner with this low a level compared to most everyone else...). did CT Friday, scan showed no sign of recurrence (PS, that's the good news! 2.5 years now...) scan sent to Sloan Kettering, apparently scar tissue is closing the new bile duct (and the fact that 8 days in New Orleans eating a crap ton of fried food didn't help either) causing a stricture. I am headed to NY (great time of year for that) after my DC trip this weekend. instead of home Monday, 3am train from Union Station to Penn Station and taxi directly to ER where they admit me, do blood, and set up for an angioplasty type procedure with a baloon to stretch the scar tissue. they leave a stent in for 2-3 weeks where i can fly home and work, i fly back for removal and should be good to go... Question: this happen to anyone else????? normal occurrence??

The way I see it, just another bump in the road in this journey... Whatca think????

Derin

Husband to Eileen, Dad to Hunter (17) and Sydney (15)Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: good and bad (mostly good)

Hey, Derin! You are not a whiner, legit reason to freak! I have not read of this before but I guess unusual people get unusual things especially when they devour fried foods! Got to treat yourself now and then, right? Did you have beignets (the donuts)? I would guess this is easier to take care of then if the CC had returned but wow, I can imagine your thoughts. Wishing you the best and sure hope the storms melt before you get there! Always so good to hear from you. Yes a little road bump!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: good and bad (mostly good)

it is sacrelige to call a beignet a donut, nay, heresey!! but yes, we ate them... and ate them... and ate them... and then ate king cake.... for breakfast, lunchndessert, and late nite snacks... we ate.....

Derin

Husband to Eileen, Dad to Hunter (17) and Sydney (15)Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: good and bad (mostly good)

Sometimes you just got to do what you got to do!!!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: good and bad (mostly good)

Derin....mostly good news it is. I have learned that any surgery can cause scar tissue. It is part of the normal healing process in the body. The bile duct is a thin tube hence, it does not take much tissue growth to cause blockage. The search function will lead you to numerous discussion on the issue of scar tissue - thought to enclose this one.http://www.cholangiocarcinoma.org/punbb … 775#p33775

I am pretty sure that others will have information to share with you as well.Thinking of you and sending tons of good wishes your way,Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: good and bad (mostly good)

Yes, the bile duct is narrow... but not mine since they used my small intestine to make a new one!! I think the s=arring and narrowing is at the connection point of the new bile duct to the liver so that is where they will 'balloon' things...

Derin

Husband to Eileen, Dad to Hunter (17) and Sydney (15)Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: good and bad (mostly good)

Hi Derin,

Yes I've heard of this procedure too and I hope that it goes smoothly for you and that you'll be back to work etc after a few weeks. Just to confirm though, you ate, ate, ate, ate and ate some more on your trip to New Orleans. Sounds like a great trip to me!!!

Hope all goes well with the balloon.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: good and bad (mostly good)

Well, I'm in NY, it was 20 yesterday, 32 today, and I'm supposed to be getting this procedure done in a half hour or so but no one has come to grab me. In Sloan Kettering in NY room 1631B if anyone is in the neighborhood!! Will post some more when I get out!

Derin

Husband to Eileen, Dad to Hunter (17) and Sydney (15)Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: good and bad (mostly good)

Good luck, Derin. I would love to catch a flight and rush to room 1631B and lend my support. Given the circumstances however; please accept my cyber presence. Awaiting to hear from you real soon.Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: good and bad (mostly good)

Good luck with the procedure Derin. My thoughts will be with you. Hope to hear from, you soon with the good news that all went well.

Love & Hugs,Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice. You should always seek the advice of your physician or other qualified health care providers.

Re: good and bad (mostly good)

Procedure done. A little sore at the entry point where it goes through the abs. I'm sure it will be more sore as the night goes on. There's a drain bag attached for now, eventually they will cap it and make everything drain to inside. I think in 2-3 days I go back under for the angioplasty part, then I can go home for a few weeks. All good so far! And, I got to eat!!

Derin

Husband to Eileen, Dad to Hunter (17) and Sydney (15)Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: good and bad (mostly good)

YEA! Now don't try to fix anything in the hospital and for heaven's sake stay off the roof! I hope you feel better quickly!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: good and bad (mostly good)

Sounds like you did good. Keep it up and keep us posted.

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice. You should always seek the advice of your physician or other qualified health care providers.

Re: good and bad (mostly good)

Glad to hear that it went well Derin, hope it doesn't get too sore and that you make a speedy recovery as well. Rest sounds like a plan for you!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: good and bad (mostly good)

Well, procedure did OK, but I blew 4 Fevers over 5 days just a shakin' and a bakin'... no fun. On 2/24 they exchanged the 10 French drain to a 12 French and plugged it the next day to drain internally. I was discharged 2/26 and flew home 2/28. 3/1 went to Sarasota Memorial with a fever. IV antibiotics and believe it or not they let me go home... hour later and one ambulance ride, I checked back in with a high fever. IV antibiotics, blood cultures, bile cultures, haven't had a fever since late Saturday. Monday they replaced my drain and did 1of 3 angioplasty procedures. Put in a 14 French tube, a bit larger. Haven't had any leaking since Monday (other drain was leaking like a sieve) and may get out of here tomorrow... definitely sick of hospitals... been in one 14 of the past 16 days... but hey, beats the alternative, doesn't it?? Negative biopsy is the best result, I can deal with the scar tissue...

Derin

Husband to Eileen, Dad to Hunter (17) and Sydney (15)Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: good and bad (mostly good)

Derin,It is Very understandable that you're sick of being in the hospital! Really glad things are progressing in the right direction for you. Hoping for no more fevers or complications. Hang in there!Willow

Re: good and bad (mostly good)

Derin,

Sounds like you have been on quite a ride for the past few weeks. Hoping things settle down and you will be home for good soon.

Love & Hugs,Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice. You should always seek the advice of your physician or other qualified health care providers.

Re: good and bad (mostly good)

Derin sound like you are on the tight track now. Negative biopsy sounds great to me. Sounds like you caught the big one and without fishing! When Teddy would get those nasties they put him right on a Levequin IV and that took care of that. But glad you are feeling better. Isn't it something? You could go to a 2 week resort, be pampered to the inth degree and pay less and enjoy it. Say, that's an idea!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.